"I was in Class 8 when I started having my periods and I was happy about it; It felt like a rite of passage into womanhood. Little did I know that disappointments would hit me hard later. I kept complaining about the strange and deliberating pain, but I was told it's normal, preferring me to take warm water and everything would be okay," Nancy explains.
"The pain was intense every month since I was in Class 8 until I got married in 2016. It's considered normal to want to have a child soon after getting married, so four years into my marriage, I decided it was the right time to try for a baby. However, issues with infertility arose, leading me to seek further help from medical professionals. I explained everything to the gynaecologist, underwent tests, and was diagnosed with endometriosis. I was confused for a while, as it was something I never expected to face."
"I was advised to relax, and they promised to treat me until I recovered but deep down, I knew it was a serious condition, I'm a high school teacher, so I was aware of implications. I underwent surgery and was told to return to the hospital every month for injections and checkups. The journey has been not easy at all; the hospital has been my second home, where I find myself camping out now and again," she painfully recalls.
Nancy like Hellen has been getting enough support from family but she complains of financial difficulties of living with this condition.
"I was told by medical professionals that the only way to manage this condition is through ongoing treatment, which involves taking medications and getting injections regularly. This all comes at a cost, and unfortunately, the management and it can be done through taking drugs and injections now and again which needs money, insurance we have does not provide the support we need. It's a distressing situation that sometimes leads to overwhelming stress in my life. Endometriosis is accompanied by significant pain, which can make one even question their existence," Nancy explains.
She typically misses around three days of school each month due to severe pain, a situation her students and colleagues have noticed. This adds to her stress, as some may misinterpret her absences and perceive her as weak, which she finds incredibly frustrating.
"There is a lot of drama associated with Endometriosis. Because of the pain, it can lead women into depression because of lack of proper diagnosis. Many women don't even know they have the condition, and are often told to simply endure the pain. This can be demoralizing, as they feel they are constantly complaining about something, that no one seems to address," Dr Farooqui says.
According to Dr Farooqui, Endometriosis can lead to various psychological issues. The impact of the disease largely depends on its location. For example, if a woman has a rectal nodule, may cause painful defecation. If the condition affects the upper vagina, it can lead to painful intercourse, which can significantly impact a woman's overall sexual health and relationships."
Subsiding medications
Despite their struggles, Nancy and Hellen remain optimistic and believe that a brighter future lies ahead.
Nancy's infertility has been addressed, and she holds onto the hope that the pains she endures will eventually subside, allowing her to live a normal life like anyone else in Kenya.
They have a message for the government as advocates for Endometriosis awareness.
"The Government of Kenya is not doing enough to silence this condition. Their focus seems to be on other issues, leaving innocent citizens to suffer. There needs to be more emphasis on subsiding medications and ensuring they are accessible to everyone. We should not fight this battle alone. This is a serious condition for women, but I remain hopeful for a better life," Nancy asserts.
"My issue is with insurance coverage related to the disease. It has become increasingly difficult to get insurance support for hospital bills, so I urge the government to reconsider this and ensure we have adequate coverage. The Sh6,000 we receive for surgery is simply not enough. As I mentioned earlier, I'm spending Sh30,000 each month, so what does Sh6,000 really amount to in that context? Very unfortunate."
Raise awareness
Dr Farooqui explains that there are no preventive measures for this disease and that treatment varies from patient to patient.
"This condition often subsides after menopause, so medications that mimic menopause can be beneficial including combined oral contraceptive pills and Visanne (hormonal drug indicated for the treatment of endometriosis). Surgery is also an option," she says.
She encourages women experiencing painful periods to reject misconception that menstrual pain is normal and to seek out a gynaecologist for a proper assessment to identify the underlying cause.
"In Kenya, there have been recent campaigns to raise awareness, but much more can be done to address this condition. The involvement of social media is crucial," Dr Farooqui says.
For years, Nancy and Hellen have suffered in silence, enduring what many people and some healthcare providers casually referred to as "bad periods" before finally receiving diagnosis of endometriosis. Their story reflects the silent struggles faced by countless Kenyan women battling this misunderstood condition, against inadequate healthcare and limited awareness.
According to the WHO, treatments for managing endometriosis can vary based on the severity of symptoms and whether pregnancy is desired. There is currently no cure for the disease.
"Non-steroidal anti-inflammatory drugs (NSAIDs) and analgesics like Ibuprofen and Naproxen are commonly used to relieve pain. Hormonal treatments, including GnRH analogues and various contraceptive methods such as hormonal intrauterine devices (IUDs), vaginal rings, implants, can also help control pain."
"Treatments plans should be tailored to individual preferences and take into account effectiveness, side effects, long-term safety, costs and availability. Raising awareness can help people to be diagnosed early as timely treatment can slow or halt the disease's progression and reduce the long-term symptoms," she concludes.